End-Of-Life Discussions

When I was a resident working in the intensive care unit (the ICU) at the University of Iowa, one of my responsibilities was to communicate with the family members of my patients. However, an intensive care unit, as its name suggests, is an intensely busy place, and I often observed among my colleagues a tendency to think about communicating with families as the last thing on their list of things to do. And though I too often found myself making it the last task of my day, I tried to make it a consistent one, knowing, as I did, that not knowing is perhaps even more anxiety producing than knowing that something is bad.

But I found the other important reason to communicate with family members at regular intervals was that it engendered relationship building. As my ICU patients were more often unconscious than not, their families were the ones we had to call upon to make decisions regarding certain aspects of their care. Sometimes those decisions were horribly difficult and we needed family members to trust us in order to feel comfortable that the options we presented were in fact the only ones available. Because if they didn’t trust us, they often wouldn’t decide anything at all. The goal of care would then often become unclear, as would therefore the goals of any of our subsequent decisions. Were we to press on fully with the intent to cure, or was our goal now only to comfort?

But what I noticed when presenting a family with the facts of their loved one’s case—facts that led us to believe it no longer made sense, from a medical perspective, to continue a full court press for cure—was that the more they trusted me the less they were able to decide how to proceed. It wasn’t because they didn’t believe the situation was as grave as I outlined; it was because they did and they simply didn’t want to be the ones deciding to withdraw aggressive care.

To actively participate in someone’s death just seems to most of us more morally repugnant—and to produce a far more burdensome sense of responsibility for the outcome—than passively allowing it to happen on its own, despite the fact that the end result is the same. As difficult a time as I witnessed families having with accepting the imminent demise of a loved one, it paled in comparison to the anguish that struggling with the decision to play an active role in the process engendered. (Many others have since observed the same thing.)

And then I had a mentor give me some advice that I at first found surprising, but that after I decided to try I found to be spot on: “Families don’t want to decide to discontinue life support for their loved ones,” he said, “so don’t let them. Take that burden on yourself. Make it a medical decision.” The truth is that by the time we in the medical field want to discuss withdrawing care at all, the real decision about what course to take has already been made—by the disease itself. In almost every case I can remember, if the decision to discontinue life support hadn’t been made, the patient would have died in the end anyway (and quickly). All I’d been doing in involving families in the decision-making process (in the name of preserving patient and family autonomy), I realized, was adding to family guilt.

So I changed the conversation. Rather than laying out the facts and asking families to decide whether or not to withdraw care (again, when the patients themselves were unable to make their wishes known), I would lay out the facts and say instead: “At this point, what we’re doing is no longer offering hope for a recovery but only prolonging the process of dying. So we’re going to change our goals from trying to cure to providing comfort only. I want you to understand something, though. I’m not asking you to decide to let your loved one die because that’s not your decision to make. It’s not even ours. The disease has made it for us.”

In each and every instance I uttered those words to a family, the response I received, despite my worry that I was being far too paternalistic, was nothing but grateful relief. I was careful always to obtain a family’s agreement—but from that point forward I stopped asking for their permission. And though I continue to this day to remain somewhat uncomfortable doing it, I’ve become convinced it’s what’s best for the families themselves. Rather than forcing them to live with the feeling that “they killed grandpa,” as one family member once said to me, he could now remember instead “him holding me on his lap when I was a child and reading me my favorite book. Now,” he told me, “I’m free to remember his laugh.”

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Having had to make this decision twice in the last 15 years, with first a husband and then my father, I can attest to the huge emotional burden this places on an individual. If I had been fortunate enough to have had some of this lifted, it would have been such a relief; not only in making the decision in the moment, but also in living with it afterward.

Thank you for sharing that. It’ll help me in running my groups about the unfortunate reality of the clients activities. As a number of them have passed away and neighbors and friends and family. Have in effort to not remembering their their loved one’s condition. Instead busied themselves with how the mentally ill lived in light of the outcome of their dying day.

I will share this with my medical students. It is a brilliant and sensitive approach. The words we choose and how we narrate and speak at moments of great importance to our patients can never, ever be underestimated. This is a beautiful narrative and authentic and true. Thank you for writing about this in your—as always—thoughtful and careful words.

Thirteen years ago both of my parents were dying from terminal illnesses at the same time. Because of liability issues, my sister and I had to make decisions that I would rather not have had to make. No family member wants to make the end of life “call.” My father died in July and my mother died in November of the same year. Their doctors were very capable people, but we were constantly asked, “What do you want to do?” I’m not a doctor, but I was asked to make medical decisions for my parents that I did not feel qualified to make. It was difficult to say the least. Thanks for the post. It made me feel validated.

As a veterinarian working on horses only, I agree that I must make or help make the decision. Over the years (39) I put a lot of horses down and never HAD to put a healthy one down. Always when I suggested or talked about it I was comfortable in my experience that it was better than prolonging the animals pain or sickness for no gain. But if the owner said no I went along with their decision with a smile on my face and every so often they were right and I thanked them profusely. The last few years before I quit I saw several examples that made me wonder about my authority/power/skill and the horse got up and walked away. I have heard of people doing the same. That makes it hard to be so sure of our selves. I realize animals could be considered a different level of life but I do agree that you or I must be willing to make that final decision if for no other reason than our own mental comfort. I am also the one who is going to do the injection.

I actually think I could have put my own mother down if it had been legal but fortunately it isn’t as I really didn’t want to make the decision but the outcome was the same. That is what we are talking about.

I really needed to read this—it really has helped me. I have to put my dog down tomorrow. It’s been a tough decision and I wish the vet would have phrased it to me like this. By chanting and the help of a friend in my district, I was able to come to this decision. I also want to say that I really enjoy reading your column each week. Thank you, Alex.

Erika: I’m so sorry about your dog. If you haven’t already read it, you might find some comfort in When A Beloved Pet Dies.

Thank you for last week’s article about hope being what stands in the way of peace, this article, and the referral in your response to Erika “When a Beloved Pet Dies” which I just read, and am still weeping. It almost feels like the Universe had you write these just for me. On August 14, I had to make the painful decision to have my cat euthanized after a long struggle to try to save her. She was a former feral who honored me by deciding to come inside. Your articles describe my journey. Now maybe I can be free to remember the free spirit that was Frederikka.

I guess I will be the dissenting voice here, Alex. I would want to make this decision myself. For myself, for my family member.

In order to face these decisions that we face with our hearts divided, we would have had to prepare for many years, training ourselves to look death in the eye, to figure out its hold on us, and to create strategies to cope.

Because I have had a career as a nurse in an intensive care, and because I have had a hospice-care person in my life x 2, and because I have lived a long life (with several deaths close-up-and-personal), I feel as if I want the responsibility. I don’t want to back off in any way.

Yes, you can be haunted afterwards. You would be haunted anyway, by the death of someone close.

And most importantly, there are fates WORSE than death. Pain. Long-term disability. A dead-end existence in a nursing home. An illness, like Alzheimer’s, which you know is fatal.

The people on Flight 93 knew the only way to stop the hijackers on 9/11 from doubling back to the nation’s capitol and/or White House, was to confront death. They wouldn’t let their aircraft be used as a weapon against the national capitol. Another lesson that death is relative.

Soldiers teach us a similar lesson: That dying for a cause is okay with them.

I am re-reading Necessary Losses by Judith Viorst right now, to re-teach myself these lessons, and to try and get stronger.

Chris: Fair enough. I never imagined my approach would be appropriate for everyone and always leave room for family members who want the responsibility to assert it. And, like you, I believe all traumas in life are opportunities in disguise for us to become stronger.

Alex, thank you for your website and especially for this article. As a hospice and hospital chaplain, I have been in with families as they tried to let their loved one go. Sometimes I’m left with the question of, “How can I help make this process easier for them?” This article may be part of the answer. While losing someone is inherently painful, I have often thought we add to the problem by telling families that it is their choice. Sometimes the most compassionate thing to do is to not give them a choice.

I really appreciate your articles and have passed several on to colleagues.

The question you didn’t address here is what happens when the patient has no family.

As a single person whose only family is my octogenarian parents, hospitalization is probably my greatest fear, even if it’s not for a terminal condition. Having seen the treatment (or lack thereof) that my parents receive in hospitals, a patient without an advocate to tear the staff away from their charting computers when he or she needs something is at constant risk of injury or death. I suspect that if I’m ever incapacitated, the important decisions will be made by clerks in Bangalore working for the company that does the outsourced work for my insurer.

“Managed Care” and cost containment measures increasingly rely on family members to provide for free the care that used to be provided by hospital nurses. What used to be called “surgery,” with perhaps a week’s recovery in hospitals is now an “outpatient procedure.” Once the “procedure” is done, the post-surgical staff put a priority on getting the patient out the door as quickly as possible so the family can take over. That’s what I’ve seen with my parents.

While waiting for my dad to be hustled out the door after one such “procedure,” I asked one of the nurses what happens when patients don’t have a family. She clearly knew what I was really asking. She looked me straight in the eye and said, “If you can afford it, you’ll hire a private nurse. If you can’t afford it, I suggest that as soon as your dad is fully recovered you go to a singles bar and marry the first woman you find.” I thanked her for the very useful advice.

With so many Americans no longer living in “traditional families,” the assumed reliance on families is one of the many serious flaws in our health care system. But nobody talks about it. I realize this isn’t directly “on topic,” but it’s what I immediately think about when there’s a discussion of the role of family members in health care.

Hapgood: You raise an excellent, excellent point. I wish I had a better answer than that nurse.

I think your post is very insightful, and very valuable, when it comes to the end-of-life discussions that must occur when the one who is dying can no longer communicate.

However, I found myself alone for hours, with my 87-year-old father, just after he unexpectedly received a terminal diagnosis. The doctors who delivered the news met my eyes with concern and compassion, certainly aware of what I would face when they left the room, but unable, given the demands of their jobs, to stay and help me face it.

All of us, no matter what our job or role or mission in this life may be, need to be ready for end-of-life discussions. All of us need to know how and when to say goodbye. All of us need to discover that the love that binds us—that astonishing bond you call “attachment”—survives physical death. And all of us need to recognize there can be such a thing as a “good death,” and how to support those we love when that time comes.

I’ve done some hospice volunteering, and it always appeared to me that the conscious patients detached more or less gently from their connections as their time approached. It can see that this might be difficult for the survivors to accept. And some didn’t appear to detach this way. I remember walking into one patient’s room as she lay in her bed, eyes closed and apparently unconscious. She was breathing in very rapid deep pulses, and looked to be on the verge of departure. I sat and watched this for what seemed like at least ten minutes, until she finally snapped out of it—seemingly literally—and chirped in the warmest possible voice, “Oh! And how are you?”

I guess my point here is that expectations might well be guarded in these situations.

The simplicity of this approach is stunning. We struggle so with uncomfortable situations and there are times we simply need to do what is honest and makes sense. I believe that sometimes professionals trip over their ethics. I had to read over this article again just to make sure I was not over simplifying!!

You escape between the horns of the dilemma: Is this the family’s decision? The doctor’s decision?

In fact, as you so wisely state, it is the disease that has the final word. I should think in most cases it would be possible eventually to see the truth of that, and accept it. The rest are details that can be worked out in a general framework.
(Obviously there are exceptional cases, etc., but I think what you propose is a truthful and compassionate solution.)

Everything you write on this topic rings true to me. This is the help I would like to have if I ever have to make the choice for a parent.

And yet I wonder what would have happened to me, 5 years ago, when in ICU and having fallen into a coma as a result of anaphylactic shock from which (according to the history which I read later) the attending doctors were unable to reverse the shut down of vital organs, if the doctor had told my sister (my parents were out of the country) that it would be best to let go as there was no hope of reversing what was taking place. In fact when my sister first assumed that I would survive and began to ask about how long would recovery be and would I need private nurses and physical therapy, the doctor told her that she really should not be thinking about making such plans and should instead focus on how she would reach my parents and what arrangements should be made for my funeral. Thank God my sister had the wherewithal to say, “No I think the first step I must take immediately is to tell you that you are off my brother’s case and I want another doctor assigned immediately because he can’t win if you aren’t on his side.” I walked out of that hospital 5 days later.

I still think your approach is right but I just wonder what would have happened to me.

Steven P: No doubt doctors sometimes err in their judgment about how likely survival for a patient is in both directions. It’s quite often a tricky thing, deciding when to change goals from cure to comfort only.

This is an excellent article. “Families don’t want to decide to discontinue life support for their loved ones,” he said, “so don’t let them” is honestly the best advice. Not only is it a medical decision that may need to be made by the healthcare staff, it is really imperative that each of us as individuals take this burden off of our families as well.

I actually work for Science Care (a nationwide whole body donor program) and educate health professionals and families on end-of-life donation options. I’ve had many discussions with hospice staff members who make it plain that some families cannot even bear to talk about end-of-life arrangements when the end is clearly near. It all comes back to advanced planning. We should all make an effort to take this burden off of our loved ones. I really liked the language that you used in your conversations and although I am sure it is difficult, it has to be made clear.